Tales from my eventful and ongoing journey as a Generation X caregiver for my father and as an advocate for Lewy Body Dementia caregivers.

Tuesday, March 5, 2013

The Last Refuge.

I recently (finally!) sold a house that I've had for several years but haven't lived in. It was a house from a previous relationship, in an area outside of Seattle where I didn't want to live anymore. I rented it for a few years because the housing market in the area was not good, but this last summer I put it on the market. I had some terrible problems with the renters, who were supposed to be friends of mine, and in the end, I really hated the house. It took eight months, a lot of work, and, I'm not too proud to admit, some praying and tears, before it finally sold. There was much celebration! The funny thing, though, was that there was also a little sadness.

Even though I hadn't lived there for three years, and didn't want to live there ever again, I still knew in some small part of me that the house was there, just in case we needed it. We had a place that belonged to me where we could go in case of emergency, or, alternatively, where a friend could stay if there was need. A last refuge. And now, that last refuge was gone.

I realized that I was feeling the same way I had felt when I sold my Dad's house a few years ago; a little empty, a little sad. Even though I would not have wanted to live there again, especially since the house was practically falling down around our ears, the house was still there. It had been there all my life; a place to return to after school each day, a place to return to every summer during college, a place to live if absolutely necessary when I was a young adult. It was a last refuge - until I sold it, and the new owners tore it down. But I still miss it, and I was sad for a long time that it was gone.

It's hard to give up that feeling of always having a safe place to go back to, represented by my childhood home, or a house that no one could deny belonged to me. I love our rental house, but all I have now that I actually own is my car! Perhaps we never stop looking for that haven, that place where we were always welcome. I miss having that, just like I miss having parents, who are the physical representation of our last refuge.

Please visit my new blog! You may also visit my website for further resources and to contact me.

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Teepa Snow

Teepa is the reigning queen of how to interact with those who have dementia and make your life as a caregiver easier and smoother. More importantly, she teaches us how to give our care receiver the best, most comfortable, life possible.

LBD Caregiver Link

LBD Caregiver Link

Toll-free LBD Caregiver Link – 800.539.9767

LBD families and caregivers can connect directly on a regional basis, through the LBD Caregiver Link, featuring “Lewy Buddies.” “Lewy Buddies" are experienced LBD caregivers who share their time and experience with LBD families by:

vListening compassionately and confidentially to the challenges of LBD families and sharing their own personal experience with LBD

vOffering emotional support

vReferring families to additional LBDA programs and services as appropriate for their needs.

While Lewy Buddies are not able to provide medical advice and are not medical professionals, they are typically well informed about LBD through their personal experiences and volunteer training with LBDA. They may also be able to help identify information and community resources concerning the diagnosis and care of a person with Lewy body Dementia.

When calling or emailing the LBD Caregiver Link, you will speak with an experienced caregiver who can provide information on LBD and who can also share their personal experience and compassion.Please leave a message and an LBDA volunteer will return your call within 24-48 hours.

"Our deepest calling is to grow into our own authentic self-hood, whether or not it conforms to some image of who we ought to be. As we do so, we will not only find the joy that every human being seeks -- we will also find our path of authentic service in the world." Parker J. Palmer

FEATURING:

Toll-Free Hot Line at the AFA (Alzheimer's Foundation of America)

1-866-232-8484

Compassion. Knowledge. Care. That's what AFA's toll-free hot line delivers. When you reach out to us, licensed social workers and other professionals knowledgeable about Alzheimer's disease and related illnesses will answer your call. They will respond to your questions and direct you to appropriate local resources to meet your needs. No question is too small; no concern is too insignificant.

AFA's toll-free hot line provides information, counseling by licensed social workers and referrals to community resources across the nation.

The hot line operates during regular business hours—Monday through Friday, 9 am to 5 pm (ET). During these hours, social workers are available by phone, as well as via Skype and live chat; to connect via Skype and live chat, click here. At all other times, please leave a message and we will return your call. To ask a question via e-mail, click here. If your situation is an emergency, please dial 911 when appropriate.

***************************Care Connection Teleconferences with the Alzheimer's Foundation of America.

Care Connection Teleconference

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Full Life Care

http://www.fulllifecare.org/

Welcome to Full Life Care – formerly ElderHealth Northwest. Full Life helps adults of all ages with chronic illnesses, physical or developmental disabilities. We are a not-for-profit organization dedicated to improving people’s lives and supporting caregivers. Since the 1970s, we have helped thousands of individuals preserve their dignity and avoid living in a nursing home or in isolation.

This is a great organization. My Dad visited them for years and got a lot of support through their Men's Support Group. I highly recommend them for help and support of your loved one.

*******************************Check out Seattle's Grief center if you or someone you know needs a little extra support during a tough time. http://www.healingcenterseattle.com/ *******************************What is the Helpline?

The Alzheimer's Association's Helpline is a toll-free number that you can call 24-hours a day, 7 days a week to get information about Alzheimer's disease. Through our National office, we have the ability to serve individuals in 140 different languages by accessing translation services.

Call 800.272.3900 to speak with a trained Helpline specialist who will provide emotional support and appropriate referrals to local resources in the 23 counties served by the Association. All calls are confidential.

About Me

I'm a writer, caregiver advocate, hospice/bereavement counselor and care manager for my father, who suffers from Lewy Body Dementia. I think it's important to talk about caregiving from my point of view as a member of Generation X. I also think it's important to spread the word on what Lewy Body dementia is, and how to deal with it effectively.
Some names, dates, details have been altered due to memory discrepancies, to maintain privacy, and to ensure narrative flow.